Up tick: Why you should be worried about Lyme disease

Jo Ann Freeman built an enclosed "cat yard" after her diagnosis to keeps her cats contained so they're less likely to pick up ticks-- and more likely to kill Lyme-carrying mice and rodents.

Courteney Stuart

Nurse Emily Tinsley traveled to New York to obtain treatment for her Lyme disease.

file photo by Jen Fariello

The documentary Under Our Skin offers a terrifying glimpse into chronic Lyme. Here, Sean Cobb tends to his infected wife, Mandy Hughes, as she suffers a seizure.

Publicity photo/Under Our Skin

Borrelia burgdorferi is the spirochete, a spiral-shaped bacterium, that causes Lyme Disease.

Wikimedia Commons/CDC

Dr. Joseph Jemsek in the Lyme Disease documentary "Under Our Skin" goes before the North Carolina Board of Medicine on charges that his unorthodox treatment put Lyme patients at risk.

Screen capture

Tick larva become infected with after feeding on small animals including mice. The greatest risk to humans comes from the tiny nymph, whose bite can transmit the disease.

American Lyme Disease Foundation

Dr. Owen Hendley, a pediatric infectious disease specialist at UVA, is in the majority of doctors who say Lyme causing bacteria is killed by short term use of antibiotics, no matter how long the infection has been present.

Courtesy UVA

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Scuttle aside, cockroaches. You're losing your spot as the most feared insect in Virginia, and your competition doesn't even look that scary. So tiny it can scarcely be seen, the black-legged tick doesn't move fast, it doesn't have a nauseating shiny shell, it doesn't even have antennae to inspire revulsion. No matter. Its fear factor comes from its status as host to a disease that, if left untreated, can permanently disable.

Jo Ann Freeman knows first hand. The retired computer software manager was looking forward to an early retirement spent traveling, gardening, and fixing up a historic Afton home. Instead, she spent nearly four years bedridden, unable to summon the energy to make a phone call. Her teeth chattered, her hands shook, and she had such severe cognitive deficits that she could no longer even read. Worst of all, no one could tell her what was wrong.

"The tests were negative for everything," says Freeman. "I thought I was dying."

After a nearly five-year medical journey that would eventually take her out of Virginia, Freeman was finally diagnosed with not one but two tick-borne illnesses including Lyme disease.

Freeman's not the only Central Virginian who's experienced the serious aftermath of an untreated Lyme infection, and Lyme cases are on the rise.

According to a recent warning by the Virginia Department of Health, Lyme is now the state's most common tick-borne illness; and it has increased eight-fold in the Charlottesville area in just two years. In the Thomas Jefferson Health District, cases have risen from eight in 2007 to 66 in 2009, the last year with available statistics. The Centers for Disease Control and Prevention reports that the number of undiagnosed cases could be at least 10 times higher.

The disease may be best known for starting with a bullseye rash around a tick bite. But Lyme sufferers say the disease is sneaky, with less than half of those infected recalling any tick bite or rash. Such clues would allow prompt and effective early treatment with antibiotics. If it escapes early detection, sufferers say, the disease moves far beyond fever and joint pain, with injuries compounded by a war over diagnosis.

Over the past 20 years, doctors have divided into two camps over the treatment of chronic Lyme disease. Dubbed the "Lyme Wars" by media in the Northeast, where Lyme was first identified in the mid-1970s, the intellectual battle pits physicians who believe the bacteria that cause Lyme can be eradicated quickly with antibiotics no matter how long the infection has existed against a smaller and less conventional group who claim that latter stages of Lyme constitute an unrecognized and nearly untreatable epidemic that requires radical medical intervention. Some in the latter camp even suggest that Lyme could be responsible for Chronic Fatigue Syndrome and could lead to Alzheimer's and other neurodegenerative diseases whose causes have thus far eluded researchers.

As the Lyme Wars rage, patients like Jo Ann Freeman struggle to find someone who'll believe that their crippling illness isn't all in their head.

Stay tick free

Your best chance to avoid Lyme Disease and other tick-borne illnesses is to avoid being bitten in the first place. The Centers for Disease Control and Prevention offers the following tick-bite prevention tips:

Avoid Direct Contact with Ticks

Walk in the center of trails, rather than through the brush.

Control the brush around your home.

Avoid wooded and bushy areas with high grass and leaf litter.

Repel Ticks with DEET or Permethrin

Products containing permethrin can be used to treat clothing and gear, such as boots, pants, socks and tents. It remains protective through several washings.

Repellents containing 20% or more DEET (N, N-diethyl-m-toluamide) can be applied to the skin, and they can protect up to several hours. Always follow product instructions! Parents should apply this product to their children, avoiding hands, eyes, and mouth.Other repellents registered by the Environmental Protection Agency (EPA) may be found athttp://cfpub.epa.gov/oppref/insect/

Find and Remove Ticks from Your Body

Wear light-colored clothing to more easily find ticks that are crawling on you.

Conduct a full-body tick check using a hand-held or full-length mirror to view all parts of your body upon return from tick-infested areas. Parents should check their children for ticks under the arms, in and around the ears, inside the belly button, behind the knees, between the legs, around the waist, and especially in their hair.

Examine gear and pets. Ticks can ride into the home on clothing and pets, then attach to a person later, so carefully examine pets, coats, and day packs. Tumbling clothes in a dryer on the highest heat for at least one hour may help kill remaining ticks.

Shower soon after being outdoors. Showering within two hours of coming indoors has been shown to reduce your risk of being bitten by a tick.

A weird rashSix years ago, Freeman was leading a life many would envy. A former computer software manager, she and her husband had retired to a 75-acre historic property in western Albemarle and were enjoying gardening and renovating the hundred-year-old English cottage style house.

In February 2005, when Freeman returned home from a vacation, she noticed an unusual rash on her rib cage and went to her doctor. Although she didn't recall being bitten by a tick, she says, she had heard of Lyme Disease and asked the doctor if her rash– which was black and not in a bullseye form– might be related.

"He told me we don't have Lyme in Virginia," recalls Freeman, now 61, who nonetheless demanded she be tested for the disease. The result was negative, and while the rash eventually cleared, over the next few months she developed increasingly serious health problems including a tremor, insomnia, arthritis, exhaustion, memory loss, and vision problems.

"I went days without sleep," says Freeman, who says she became a recluse and even lost the ability to read. "I couldn't comprehend what was on the page," she says. "I couldn't hold a conversation."

Convinced she was dealing with an infection, she finally demanded that her doctor prescribe an antibiotic. She improved slightly, she says, but continued to suffer from neurological symptoms including the sensation that her brain was "vibrating."

After an MRI showed lesions in her brain, a neurologist suspected but couldn't confirm Multiple Sclerosis– an incurable neurodegenerative disease– but again insisted it couldn't be Lyme because Freeman didn't have the elevated white blood cell count that typically accompanies such a bacterial infection.

Determined to find the root of her illness, Freeman says, she returned to an infectious disease specialist in Washington, D.C., whom she had previously consulted. This time, based on the lesions revealed by the MRI, Freeman says the specialist confirmed her original self-diagnosis and told her the lesions were "neuroborreliosis," a condition caused by the bacteria that cause Lyme Disease.

Six weeks of intravenous antibiotics that the specialist prescribed again yielded only slight improvement in her condition, says Freeman. By this point, the specialist declined to order further medical tests and referred her instead to another type of doctor: a psychiatrist.

It would be another three years before Freeman finally learned the extent of her illness.

History of LymeIn 1975, parents in Lyme, Connecticut, alerted health authorities to a cluster of young children who'd developed pain and swelling in their joints– what appeared to be rheumatoid arthritis. According to the Connecticut Department of Health website, within two years of those first unusual symptoms, 51 cases of the by-then-named Lyme disease were confirmed. However, it would be five more years before the bacterium that causes the illness– Borrelia burgdorferi– was identified and the mode of transmission– tick bite– determined.

By the mid-'80s, Lyme disease was being diagnosed frequently throughout the Northeast, and doctors were recognizing that, if left untreated, it could have some nasty neurological effects like the ones Freeman would experience. Making diagnosis of chronic Lyme even more difficult is that the symptoms are so diverse: exhaustion, tremor, cognitive deficits. They can mimic many other diseases and can emerge over years.

That, says Freeman, is why educating doctors on the full range of tick-borne illnesses is critical– especially in light of statistics showing the increase in cases and the research that suggests as many as two-thirds of Lyme sufferers are co-infected by another tick-borne illness (including the parasitic infection Babesiosis, and bacterial infections Ehrlichiosis and Bartonellosis). Research conducted at UVA suggests that tick bites can even prompt a mammal meat allergy that can lead to anaphylactic shock. If the co-infections– which can cause similar symptoms to Lyme– aren't diagnosed and properly treated, the patient won't get well.

Faced with the possibility of so many tick-borne diseases, one might be tempted to trade a hike to Humpback Rock for staying indoors watching 30 Rock. But UVA pediatric infectious disease specialist Owen Hendley says that understanding the tick life cycle– and practicing basic prevention– can offer significant protection.

Adult ticks meet and mate on deer, feed on their blood, then, engorged, fall off and lay eggs. The eggs hatch, and in the larval stage, they feed on small rodents including mice and chipmunks, which often carry borrelia. The tick's next life cycle– the nymph stage– poses the greatest risk to humans, says Hendley.

"They look like a dot," says Hendley, explaining why people wouldn't even notice they if they had a nymph attached, thus allowing it to feed long enough to transmit disease.

Keeping grass short and animal populations under control can limit the number of ticks to which you're exposed. And even if you are bitten by an infected tick, you won't necessarily become infected. Numerous medical sources including the CDC and the Virginia Department of Health say a tick must be attached for 36 to 48 hours in order to transmit Lyme and other illnesses.

The problem is, if you do get a tick bite, you may not even know it.

According to statistics from the International Lyme and Associated Diseases Society– an organization founded by those who favor the unconventional treatment of Lyme– fewer than 50 percent of Lyme-infected individuals remember getting bitten. As for the supposed classic bullseye rash that appears after infection, according to ILADS, it's not the most common early expression of infection. Instead, atypical rashes– including the one Freeman experienced– are more common, and in some cases, there's no rash at all. That means that the typical earliest symptoms of Lyme, joint pain and fatigue, could be confused with other illnesses including Chronic Fatigue or dismissed as nothing serious for months or even years.

Adding to the diagnosis difficulty is that the main blood test used to screen for Lyme misses a whopping 30 percent of cases, according to ILADS data.

Finally diagnosedThree years after her psychiatric referral, Freeman says, her physical condition was worsening. A second MRI showed new brain lesions; but this time, she says, her neurologist told her it wasn't MS. With the neurologist unable to give her a diagnosis, Freeman says, her psychiatrist recommended she contact ILADS to get a referral to a "Lyme literate" physician, one who specializes in the treatment of Lyme Disease and other tick-borne illnesses.

The Baltimore-based doctor to whom she was referred ordered a different test called the Western Blot. This time, Freeman tested positive for both Lyme Disease and a malaria-like parasitic infection called Babesia.

"It took four and a half years and 15 doctors to get a diagnosis," says Freeman, who says she has now mostly recovered after lengthy treatment for both illnesses.

Freeman isn't the only Central Virginian who struggled to find a diagnosis.

Six years ago, Emily Tinsley, a mother of two children, noticed she'd developed disturbing neurological symptoms including numbness in her arms and memory loss. Like Freeman, Tinsley didn't recall a tick bite or a rash. But having grown up in Massachusetts, where Lyme has been endemic for decades, she asked her doctor to be tested. Like Freeman's, Tinsley's first test came back negative, but over the next two years she became sicker as she searched with increasing desperation for diagnosis and treatment.

"I couldn't work, couldn't drive, couldn't read, couldn't use a computer," says Tinsley, who says she was enraged by one doctor's suggestion. "He said I was a neurotic mother," she recalls, "that I was just stressed out."

Tinsley, however, is a nurse with a masters degree. And as the wife of Dave Matthews Band fiddler Boyd Tinsley, she had the money to seek out-of-state medical care. Tinsley began traveling once a month to New York, where a Lyme-literate doctor ran the Western Blot test and diagnosed her with both Lyme Disease, Babesiosis and a third tick-borne bacterial infection, Bartonellosis.

While she says long-term antibiotics have restored her health, Tinsley joins Freeman in expressing outrage that it took years and thousands of dollars to find a diagnosis– and that even with the diagnosis in hand, insurance wouldn't cover the extensive antibiotic treatment because it's considered outside standard treatment guidelines.

"I had the resources to pay," notes Tinsley. "Most people don't."

Financial resources seem to have played a role in the case of Gerry Danner. A longtime Charlottesville restaurateur who launched such popular eateries as the Blue Moon Diner and Dr. Ho's Humble Pie, Danner says he contracted Lyme Disease nearly 14 years ago while living on a farm in Albemarle County.

Danner says the illness forced him from his career, and without insurance or a steady income, he couldn't afford out-of-state travel for treatment.

"I lost my life," says Danner. "It's like the flu, and it only gets worse," he says, recalling chills, fever, and a loss of appetite. Even worse, he says, were the cognitive symptoms.

"Your brain feels fogged where you just can't think," he says. "People ask questions, and you can't come up with the answers. Generally, you don't fit in anymore."

Danner, 55, scoffs at health experts who say Lyme wasn't in Virginia back in the 1990s.

"My dog got it, and she died the same summer I got sick," says Danner, who tested positive about three and a half years after he first became ill with arthritislike symptoms.

Danner says he went on antibiotics for five years but only grew sicker, suffering from constant headaches, muscle aches, arthritis-like symptoms in all his joints. He says that he suffered until several months ago, when he began treating himself according to a 19th century physician's salt treatment for syphilis. (Like Lyme Disease, syphilis is caused by a spirochete that eventually invades the brain.)

"It all sounds like gooey granola stuff, and I would have doubted it years ago," he says. "But it works."

Danner says he's now well enough that he's planning to open a new eatery– his seventh. "I've got time to make up for," he says.

UVA doctor Hendley, however, says there's no scientific evidence that patients who pursue treatments outside the mainstream will be cured, even by extended prescription drug treatments.

Controversy"Prolonged antibiotic therapy doesn't provide any benefit," says Hendley, who cites several studies in which patients with verified Lyme-caused neurological symptoms showed no improvement despite three months on antibiotics.

Hendley holds the mainstream medical opinion that once a patient is treated with a short course of antibiotics, the Lyme-causing bacteria is killed– even if the patient has been infected for years. He readily acknowledges that chronic Lyme exists, but he says symptoms that persist after guideline-approved antibiotic therapy are not caused by ongoing infection but are instead "Post Lyme Syndrome," possibly caused by an extended immune system reaction.

"We don't know what it is," Hendley acknowledges.

New York-based internist and epidemiologist Daniel Cameron says he does know. The immediate past president of ILADS, Cameron, who practices in the north-of-Manhattan village of Mount Kisco, contends that the studies Hendley cites are flawed because they didn't incorporate the full range of needed treatments.

"We always need to address the symptoms with not just the antibiotics," he says. "We need to manage their fatigue, their loss of function, the dizziness, other symptoms, as well as the emotional side of being sick for nine years," which Cameron says is the average time Lyme sufferers have been sick before arriving at his clinic.

Cameron asserts that the biggest challenge in treating Lyme and other tick-borne illnesses is diagnosing them in the first place and determining whether any co-infections are present. More accurate testing is needed, he says, as is a way to determine definitively whether the bacterial infection is still active after treatment.

Whether longterm antibiotics are helpful or dangerous to patients with Lyme may be debatable. Prescribing them, however, is undoubtedly dangerous to the physician, who may face loss of his medical license if he doesn't follow official treatment guidelines set out by organizations including the Infectious Disease Society of America. North Carolina physician Joe Jemsek learned the hard way.

In 2006, Jemsek faced sanctions from that state's medical board for prescribing longterm intravenous antibiotics for his Lyme patients. Despite acclaim he received in the early 1980s for diagnosing one of North Carolina's first HIV cases, he was stripped of his right to treat Lyme sufferers– an experience featured in a 2008 documentary called Under Our Skin. In the film, numerous Lyme literate doctors report threats from their state medical boards after prescribing long-term antibiotics.

Jemsek has since relocated his practice to Washington, D.C., and a phone call requesting comment was returned by his attorney.

"He's a pioneer and ahead of his time," says the attorney, Susan Green, who says she has advised Jemsek to refrain from public statements. "He needs to stay focused on what he does, which is treating his patients."

How bad is it here?Local physicians, such as Carlos Armengol of Pediatric Associates, say that Lyme is a growing problem.

"We see both the kids who have the classic bullseye rash and a lot who come in with swollen joints, particularly swollen knees," says Armengol, noting that prompt antibiotic treatment has cleared the symptoms and that none of his youthful patients have developed symptoms of chronic Lyme.

"I see it all the time," says Greg Gelburd, of Downtown Family Health Care, estimating he diagnoses at least one Lyme case every week. Most resolve quickly with antibiotics, but he's seen several patients suffering from chronic Lyme. For Gelburd, awareness is key, and he suggests making prevention measures a part of any routine.

"Whenever you take a walk, put sunblock on before," he says. "And when you get home, check for ticks."

In spite of their nightmarish experiences with tick-borne diseases, sufferers Tinsley and Freeman say they're not suggesting that everyone stay inside for the summer. But educating the public is important, and educating doctors– particularly at a teaching hospital like UVA– they say, is critical.

A vaccine was available in the late 1990s, but according to the CDC, it was discontinued in 2002 by the manufacturer, who blamed low demand. Freeman hopes to see a new vaccine emerge– and better surveying of how many ticks are actually carrying Lyme and other infections in Virginia.

40 comments

mer May 17th, 2011 | 6:40pm

Good article but you should have included much more
on prevention. Spraying clothes and shoes with
Cutters works well and also controls chiggers
which don't carry disease but really itch a lot.
There are a lot more strategies--staying on the
trail when hiking, washing outdoors clothes frequently
or keeping them separate,
tucking pants into boots, on and on. (Fire
ants apparently "control" ticks out West.)

Thank you for the article. I usually don't read LYME articles on line anymore because the ignorance of the writes makes me mad. I like this article. It comes close to telling the full pain of LYME. I have been struggling with LYME for 3 years now. It took 10 doctors and a psychiatric evaluation to finally find a LLMD Lyme Literate Medical Doctor. I have been on antibiotics for almost 2 years. I did the CDC recommended 1 month of IV antibiotics with no change. I can barely walk, some days I can hardly speak strait. I lost my business to this disease and thousands of dollars to out of network doctors. I have Neuroborreliosis and I pray that my doctor finds the magic combination of drugs to help me.

Shannon May 18th, 2011 | 7:39am

I'd certainly like to see more statistics on how many ticks are carrying Lyme's here in central Virginia. About a month ago I found a tick attached at my rib cage, within a day of being in the woods. I tweezed it and put anti-itch cream on the bite area, but the itchy rash has only recently dissipated. I'm uninsured, so a little freaked out that I might out to be checked, but have no resources to do so. Should I just wait and hope that I found the tick in a "good" timeframe and/or that it wasn't carrying Lyme's? Scary stuff!

faith May 18th, 2011 | 7:52am

What I find interesting is that I can get my dog vaccinated, but not myself. Would also be good to know more about the pet/people transmission issue

boooo! May 18th, 2011 | 8:13am

The article's alright, but it falls short because what's not stressed is that the culprit behind Lyme disease is specifically the *deer tick.* This article fails to mention that, and instead, speaks in generalities about *ticks* that feed on deer, dogs, humans, etc. There are different species of ticks, but it's apparently only the *deer tick* that causes Lyme. As someone who grew up in Connecticut, spending many hours in the woods that surrounded our house, I can say with certainty that there's definitely a difference in the species. Ticks were part of life there, and if we went for hikes in the woods we could come back with over a dozen of them crawling on us. I have been bitten by one, where it managed to make it to my head and get latched on, as did my little brother who found one attached to his ear once, but none of us contracted Lyme disease. Probably because they weren't the tiny deer ticks, it was the larger "dog tick" things. This article needs to note the difference so people don't just assume that all ticks cause Lyme disease. (all ticks are nasty, no doubt :D but they don't all cause Lyme.)

Great article! I myself have been to probably 7 or 8 doctors before finally getting a diagnosis. I diagnosed myself last April (after dealing with worsening symptoms for 5/6 years & being told nothing is wrong) and went to my doctor who still for the 3rd or 4th time asking would not test me for Lyme even after having found another deer tick on me and was so sick that I couldn't get out of bed for almost 4 days. After going to a Lyme Literate doctor who said I can tell you before the tests come back that you have lyme and now after 10 months on antibiotics, 1 month on I.V. antibiotics and all kinds of other remedies I am feeling better but not great. The neurological issues pretty much subsided after the IV ABX. If you think you might have Lyme get tested! Make sure they test you for all off the tick-borne illnesses as well. There are so many other co-infections that will make you ill as well.

Earwig May 18th, 2011 | 9:09am

If you worry about contracting Lyme's disease after a tick bite you will be more likely to display the symptoms.

Skinny May 18th, 2011 | 9:27am

Great info in this article, Here's some advice you can really use. If you feel sick with symptoms you have never felt before and are not allergic to doxycycline, find a doctor who will prescribe this ASAP. The tests for tick borne viruses often dont detect the viruses. I had Ehrlichiosis and finally found a skilled doctor who knew enough to tell just by my symptoms what it was and started doxcycline immediately. Halo type headache and hot and cold spells.
That's one prescription I never missed taking my pills on time! It will make you cry for your mommy.

Skinny May 18th, 2011 | 9:31am

One more tip for everyone, if you walk in the woods very much, wear knee high farmer rubber boots, it will greatly reduce the ability of ticks to get to you.

If you have deer ticks (or any ticks) on your property, you might consider keeping guinea fowl. Several years ago, we had a flock of 8 guineas, and they feasted on the ticks such that we found no ticks on ourselves or our grandchildren as long as we had the birds. One by one, the birds were picked off by foxes and dogs, but even during the summer when we were down to one bird, (and a one-legged bird, at that) there was nary a tick found in our yard. (And having a black snake in the basement keeps the mice away. But that's another story.)

Old Timer May 18th, 2011 | 9:54am

Thanks for an article that lets those suffering know they are not alone. What would be a GREAT addition to this article is contact points and names of those who were found to be Lyme literate. There is no point in having everyone traipse through 10 doctors to find someone literate. It is a waste o our health care dollars, and just runs insurance rates up for everyone.

Susan May 18th, 2011 | 10:20am

Like many of you, my sister spent 6 or so years trying to get a diagnosis for her Lyme. She continued to get worse month by month. She was finally diagnosed in 2006 by doing the Western Blot test. She experienced severe pain for years,She spent so much time in bed because she did not have the strength to do anything else. I could not even begin to tell you how many different doctors she visited and no one had the answers.She finally found a Lyme specialist but she had so much damage already. The medications were almost as bad as the Lyme. We lost her on March 25, 2011 from an apparent heart attack. She was only 56 and had been sick for 10 years with this monster disease. The Lyme had caused brain lesions, some liver damage, vision problems, severe joint and muscle issues, weight loss, hair thinning, seizures - you name it. This is a horrible disease that people need to be aware of. I don't want others to suffer the same fate that she did because they are not informed. If you have Lyme, don't give up the fight. My sister fought up until the end to try to find help for herself and others. Keep fighting to make people aware.

Col. Forbin May 18th, 2011 | 10:28am

Good article.

Grace May 18th, 2011 | 12:07pm

How about a list of Lyme-literate doctors in this area?? I picked numerous deer ticks off my dogs and myself last season, and they're out again now. The bites itch like mad for weeks, and because the ticks are so tiny, you can't always find them before they latch on.

Joe LEBLANC May 18th, 2011 | 12:29pm

What does the IDSA continue to ignore the many requests to include any doctors from ILADS to help in determining that there may be flaws in their Lyme disease treatments GUIDELINES. These are the same GUIDELINES that have been challenged by the former Attorney General of CT. Contrary to the comment that this story is singular, there have been many of similar stories of Lyme sufferers having to travel many miles to find a Lyme Literate MD. When I first started researching LD in early 1995 there was probably a couple dozen hits on Google. Today there are more then 3 Million hits. How many Lyme sufferers continue to pay out-of-pocket for treatments because insurance companies refer to the IDSA GUIDELINES when they determine what is payable and what is not.
YES! We need an ACCURATE and approved test for Lyme disease and/or other tick-borne diseases.
We Lyme disease sufferers are still waiting for substantial results, if any, of Gov McDonnell's Task Force on Lyme disease and the directions needed to supply Lyme literate doctors (LLMD) here in VA.
We don't want to hear that a LLMD, like Dr. L. Zakrinson, has to prove to a medical board of peers about how she was treating Lyme disease sufferers.

The following link is an excerpt of what Dr Z had to do in order to keep her license to practice medicine here in VA.

"The damage caused by the complaint against me was extensive: many weeks of intense preparation for the hearing, a significant amount of lost income, declining physician-originated referrals (though patient-originated referrals are very robust), lawyer's fees, not seeing many patients who needed my type of specialized care and, worst of all, the unnecessary fear and anxiety my patients experienced over the possibility of losing the best doctor that they have ever seen." Dr. Leila Zakrinson...

The Doctor of Last Resort, profiles a Lyme-literate MD in Lexington, part of an excellent 3-part article which appeared in the Roanoke Times last December.

Susan, I'd like to express my deepest condolences on your loss. I'm about the same age as your late sister, and I myself have felt like I was sliding towards the brink of an abyss for a number of years. I'd generally been a healthy, active individual for my whole life, but over the past decade, I began experiencing one painful episode after another. The symptoms were usually intermittent and "self-resolving", but on a few occasions were acute enough for me to believe I was having a heart attack, stroke, or vertebral collapse. Tests and scans, such as I could afford, revealed no abnormalities. I felt as if I were approaching 80 years old instead of 50! Over the years, my bouts of feeling 'not-right' appeared with greater frequency, until one morning last June when I awoke with half of my face paralyzed. It's too bad that the ER staff were evidently unaware that Bell's Palsy was as often caused by Lyme Disease as a virus, for which I was treated and which did not begin to address my condition. (In fact, I didn't start improving until well after I'd finished the anti-virals and the steroids.)

Luckily, I ran into this same LLMD at my son's summer camp last July. She was familiar with the many presentations of the disease, both through her and her family's own experience and that of patients in her care, and she shared with me what had worked for them. I'm positive that my adopting her recommended protocol of dietary changes and use of herbal allies is the reason
I'm now experiencing many more 'good days' than bad, and continue to see improvement in my mental and physical functioning. Having a supportive companion also helps. The greatest relief is from the feeling of hopelessness that comes from living with chronic Lyme. I understand why suicide is the leading cause of death among sufferers. Hope this article can serve to educate the general public as well as healthcare professionals.

Cindy May 18th, 2011 | 7:16pm

I have had Lyme for 5 yrs. and now I am doing much better because I am using natural things to fight this terrible plague. Allimed and teasel root have made all the difference for me and now I have hope to recover. This company helped me:www.allimedonline.com

Helen May 19th, 2011 | 7:56am

According to the CDC, "Lyme disease is one of the most rapidly emerging infectious diseases in North America and Europe. In 2009, nearly 30,000 confirmed and more than 8,500 probable cases of Lyme disease were reported to the CDC in the United States alone. Named after a small Connecticut town, Lyme disease is transmitted to humans by the bite of ticks infected with the bacterium Borrelia burgdorferi. This multi-system infection typically occurs in stages with different clinical manifestations at each stage. While it can be treated effectively with antibiotics, in some cases recovery may be incomplete - although there is no evidence that any of these post-Lyme disease syndromes respond to further courses of antibiotic therapy."

The CDC has just launched a new website about tick-borne diseases at www.cdc.gov/Lyme This is the ultimate in up-to-date information about Lyme disease in an easy to format. It has information for patients and medical professionals. There is even a free online communication toolkit packed with information to help state and local health departments prevent Lyme disease.

Chronically ill patients are being exploited and harmed by unscrupulous medical providers diagnosing them with a condition called Chronic Lyme disease. There seems to be little dispute among the medical community anymore that untreated Lyme disease, as with many infectious diseases, may result in chronic symptoms or incomplete recovery. There is a back-story to this chronic Lyme disease epidemic that should make your blood boil with anger about medical experimentation on chronically ill patients at the hands of licensed medical providers commonly referred to as LLMDs, Lyme Literate Medical Doctors.

Lyme disease is real. It can be a devastating illness. There needs to be more research done and more definitive tests need to be developed. However, the outstanding questions about this disease in no way condone the exploitation being done to patients by Lyme doctors and activists that diagnose every symptom as if it were a symptom of Lyme disease.

Rob May 19th, 2011 | 12:19pm

The IDSA/CDC conclusory one-size-fits all approach to Lyme emboldens people like Helen to express their opinion as gospel truth and dismiss those who disagree based on their own different experience and analysis as exploitative and unscrupulous. Worse, by doing so they enable the insurance industry to deprive the vast and growing population of chronic Lyme sufferers of the care that can, and often does, make an enormous difference in their quality of life. This despite the fact that, as Dr Hadley blithely acknowledges in your excellent article, the mainstream medical community "does not know what it is" that causes "the symptoms that persist after guideline-approved antibiotic therapy." It is the ultimate in arrogance (and unscrupulousness, I might add), for members of the medical community to participate in a virtual conspiracy to condemn ever-increasing numbers of very sick people to a destiny of living with those bewildering "Post Lyme Syndrome" symptoms by pronouncing that they nevertheless know what they are not!

I am an attorney, and I like simple, straightforward, proven answers. But the medical coummunity has such easy explanations and solutions for a really very small portion of the range of human health issues. In well-funded areas like some cancers and AIDS, knowledge has been vastly improved by research. But even in those areas, some "breakthroughs" end up being shown to be wrong or misguided by subsequent evidence. Remember, leeches were once supported by the mainstream medical community. I suspect that those who suggested that other approaches might be better were chastized for trying something different.

It has been tough for someone like me to accept that there just are not easy answers to some (most) medical issues. But for those of us financially fortunate enough to have been able to see first-hand the impact of treatment protocals that insurance companies have been enabled by IDSA/CDC to avoid covering, the idea that other sufferers would be denied such access is disgusting. I have two nearly-adult daughters, both of whom have suffered with the disabling effects of chronic Lyme for more than 6 years. While both have been and are amazingly resilient kids, who have never given up, they have not been the same active, enthusiastic, self-confident and energetic kids they were before Lyme hit.

Reluctantly, I agreed a year and a half ago to permit our oldest to undergo intense year-long treatment under the direction of one of the docs mentioned in this article. We are so pleased with the result that I - less reluctantly this time even though I know at times the treatment is worse than the disease - have agreed to let our younger daughter try it too. Our oldest daughter is a new person! She may not be done with all of this yet, but she is very nearly the person who we (and she) lost in many ways seven years ago. Refreshingly (albeit sadly), I don't think anyone in the LLMD community is claiming they have treatment for this desease completely nailed down yet. But if we are fortunate, we may be able to say the same about my younger daughter a year or so from now.

I hope this article and others like it will eventually result in increased funding for (unbiased) research on chronic Lyme, and eventually a more uniform best practices protocal for treatment. But until that time, the government should act to ensure that creative and selfless docs are not forced to risk their licenses to treat needy patients who are being mistreated or ignored by mainstream medical practitioners, and that insurance companies are not facilitated in their efforts to cut costs by cutting coverage for treatments that can, and are, making a difference for those fortunate enough to be able to give them a try.

thomask May 19th, 2011 | 1:24pm

the only thing that made this rag stand out fom the other paper were the covers (even though they have looked progressivly worse over the past several months) now it looks exactly like the other paper. I thought someone had put the wrong paper in the wrong box. myabe it's time to bow out quietly instead of embarrassing yourselves, really LAME

John Walton Giuliano May 19th, 2011 | 4:13pm

Yet another whitewash by Courteney Stuart. Not a word about the fact that Lyme disease is a biological weapon created (and then deliberately released on the American public) on Plum Island by Nazi war criminals given asylum in the United States by the CIA in exchange for what they could provide the shadow government. Not even worth a mention, is it? If you want a real story you'll go to this link and read the article. www.rense.com/general67/plumislandlyme.htm

Emily Tinsley May 20th, 2011 | 7:47am

Thank you for this article. Awareness and understanding of tick borne diseases in this area is improving but has only hit the tip of the ice burg. Details mentioned in the above posts are all important but for those of us that have been struggling in silence for so long, this article is a HUGE step in the right direction.
FYI to Boooooo, ALL ticks pose a risk for illness... lyme, babesia, bartonella, erlichea.Yes, some ticks may not carry the threat, however it is luck of the draw in such a saturated region. Don't be fooled, all kinds of ticks carry disease.
It is with tremendous hope that our local health care professionals will seek professional training for diagnosing and treating these diseases. Attention must also be paid to testing for coinfections that have symptoms similar to lyme and can extend recovery time and illness severity. Please refer to ILADS.com for educational resources. Thanks again for this effort.

Patrick May 20th, 2011 | 10:20am

Plum Island? I thought that was where the members of the Fed, world bankers, the Illuminati, and freemasons met once a decade to plan out their strategies for the world?

It also has nazi scientists inventing diseases? Wow

Creosote May 20th, 2011 | 8:37pm

Coincidentally, Brian Dunning's "Skeptoid" podcast this week is on Plum Island, and touches on the Lyme disease legend: http://skeptoid.com/episodes/4257 (full transcript is at that URL, along with the audio)

John Walton Giuliano May 21st, 2011 | 9:29pm

Patrick, you're probably thinking about Jekyll Island. Those scumbags and their private islands. Greece just gave one of theirs to one of them because they "owed" him "money" that they borrowed from him after he used his money machine and/or digital money creating account to make some more money and lent it to them. I wish I could get in on that scam. At least I've got my own plum tree, but most of the plums seem to get all resiny and then rot.

vakarcska May 22nd, 2011 | 1:58am

Great article! I am so pleased to see your article because these pioneer articles helped me to self-diagnose myself in this January.
I would like to stress to everybody that the current testing is not accurate!!!! I had had several tests and these were all negative until I went privately for a Western Blot which came out positive at first time.

I have been suffering for 8 years with this disease and my neurological symptoms and physical symptoms got worse and worse while my doctors were suspecting ‘chronic depression’. About 3 years ago I become so ill that it was clearly not a depression. After several examinations my brain MRI showed lesions and the neurologist suspected but couldn't confirm Multiple Sclerosis. This was diagnosed together with deep vein thrombosis although they never find a bloodclot the veins in my right leg were/are ruined and so my legs were swollen all the time. As a result I stop wearing jeans because I was not able to put them on!
These still weren’t enough for my GP to send me to a specialist. The infection has speared through my body and ruined several joints including my jaw therefore I have lost my teeth on the right side and had cysts and polyp operations on the right side of the facial skull where I am not so happy owner of two wholes on the bone! I was in so much pain that I couldn’t go to work and my joints were swollen so badly that I couldn’t move or even open my mouth or eyes for days. My brain was foggy all the time, I couldn’t process information or manage my body and it was difficult to decide whether these were from the extremely strong painkillers or the ‘spooky’ illness I was suffering from.
Last year I was diagnosed with seropositive rheumatoid arthritis which was so bad that I started on very high dosage of medication. Of course I ended up in hospital so doctors stopped the drugs and put me on another one which had the same result. Specialist almost wiped out my immune system completely while I had the chronic infection!!! At that point I decided to cure myself and paid for my treatment and for my doctors.
I am 38 years old and last month I was signed off from rheumatology (where the leading consultant take was on my case that: chronic lyme borreliosis is just a myth!) I am on lots of antibiotics but I feel much better already and started to work again part time :O)

I am so happy and grateful for all those doctors who risk a lot for us and believe us and has the strength to heal not only follow guidelines, great big thank you for you all!!!!

…and one more interesting fact: Did you know that Lyme borreliosis can be transmitted with regular sexual intercourse?
We got my partner tested and he was positive too although he had no major symptoms!!!!
Susan: I am sending all my love to you and your sister in Heaven!

Yankee Transplant May 23rd, 2011 | 9:12am

Stop being Fox News. This is not a 2-sided issue. These are a few quack doctors who are pushing a fake disease and hoodwinking suffering people. Not cool. Dr. Cameron should be strung up.

This is exactly the same as the assdocs who push the fake idea that vaccines cause autism.

I live in wisconsin tickborne viruses are very prevalent, it still took the third different doctor to figure out it was Erlichiosis. Felt so bad at one point that I went to the emergency room where the 2nd doctor did a spinal tap to test my spinal fluid. Found nothing and still did not prescribe an antibiotic. My share of the bill was 400 bucks, glad I had insurance.

My father in law was not so lucky, he was misdiagnosed back in the early 90's when doctors were not so aware of tickborne virus. His health was destroyed, lots of Prednizone to control the symptoms which has it's own destructive effects.

native May 23rd, 2011 | 9:20pm

If you find a tick on you that has bitten you..DO NOT get rid of it! If you are experiencing flu like symptoms that won't go away, even if there is no rash get to a physician immediately and take the tick with you. Most lymes tests are inadequate but physicians are more likely to administer prophylactic treatment if you have the evidence! Do not procrastinate in seeking treatment; untreated lymes disease is a horribly debilitating disease.

native May 23rd, 2011 | 9:28pm

@ Yankee Transplant...I am a medical professional and unfortunately a sufferer of lymes disease. Lymes disease is a very real and serious illness. I know from first hand experience. My tick wasn't fake and neither are the symptoms I live with every single day of my life. FYI many do not develop the bullseye rash as in my case. Lymes is very real and prevalent in this state.

Jill May 24th, 2011 | 3:45pm

Dear Gim: YOU obviously did not know that the Guildelines you are sending people to are the Guildelines that were created by a panel which included people associated with and paid by insurance companies to create this so-called guildline for doctors to follow because the insurance companies were complaining about the cost associated with long term Lyme Disease care...get a clue! Or maybe your one of those people paid to reject the facts and live proof that this is a disease is very serious and no one should have to go through years of confusion, pain and frustration trying to figure out what is wrong with them.

Sheila Nudd May 25th, 2011 | 1:00pm

Well written, accurate article. I was misdiagnosed for 11 years. I worked with Nobel prize winners, but can barely read now. My last 3 years teaching were extremely difficult. I was confused all the time. Mepron, azithromycin, Malarone, and many other drugs got it under control, but, I will never get my life back. Medical doctors were the enemy, and for the most part still are.

sigmund derman June 23rd, 2011 | 9:54am

It is wrong to portray the Lyme disease issues as a balanced dispute between two relatively equal groups. The mainstream views are backed by decades of solid respected scientific research. In this country, the scientific study of Lyme disease was started by Dr. Alan Steere at Yale University. He is now at Harvard and still doing very excellent research on this subject. The "Lyme literate" docs are, in my opinion, pushing bogus treatments and preying upon unfortunate people, most of whom never had Lyme disease in the first place.

As a neurologist, I have seen quite a few patients who have wasted large amounts of time, money, and--in a few cases--the opportunity to get prompt necessary treatment for an otherwise treatable condition by going to self-styled "Lyme literate physicians." There is a good article published in Forbes called "Ticks aren't the only parasites living off patients in borreliosis-prone areas" by David Whelan which gives a good (and to my thinking, quite accurate) picture of the various clinics which pour antibiotics into patients for non-existent Lyme disease (http://www.forbes.com/forbes/2007/0312/096.html). Quackwatch also has a good article entitled "Lyme Disease: Questionable Diagnosis and Treatment" (http://www.quackwatch.org/01QuackeryRelatedTopics/massageschool.html)

But there are a few issues that the above referenced articles overlook. First is the fact that there really are some undiagnosed cases of Lyme disease out there. Especially in the first three weeks or so, the standard tests often are falsely negative. This really should not matter if the doctor does a good history and physical and knows what (s)he should be looking for. But cases can be missed and then go on to severe involvement, such as is seen in neuroborreliosis (i.e. nervous system damage). If damage has already been done to the nervous system, heart or bones/joints it will sometimes be impossible for the patient to return to normal even after the infection is eradicated. In other words, all the borrelia spirochetes may be dead (and after one or two months of therapy this is almost always the case) but irreparable damage may have already occurred. Nonetheless various treatments including physical therapy and other rehabilitative methods can help. This may account for a small percentage of those who have chronic symptoms after "adequate treatment". There also is a small percentage who really did not get enough treatment in the first place. But, as far as I know, if a month of oral treatment does not eliminate the infection, one or two months of IV treatment will do it in almost all cases. I do not think there is any evidence that any patient has needed more than two one month IV treatments. There could be rare exceptions, however, such as immunosupressed patients. If the infection has settled into a joint, such as a knee some special approaches might be needed including tapping the joint and (possibly) putting medication directly into the joint. But I would not trust the average Lyme literate physician for that. I would allow only a well trained rheumatologist to tap my knee and/or inject medication into it. There are a number of recent papers by Dr. Alan Steere on chronic rheumatological problems after the borrelia spirochete has been eradicated. It appears that the infection can set up a chronic, persistent autoimmune reaction which can keep going even though the spirochetes are gone (the most recent paper on this is Clin Infect Dis. 2011 Feb;52 Suppl 3:s259-65.Relationship between immunity to Borrelia burgdorferi outer-surface protein A (OspA) and Lyme arthritis. Steere AC, Drouin EE, Glickstein LJ.) Though Steere's paper is about arthritis, this also could conceivably be happening in the nervous system, the heart and other organs. Also, a patient could be independently infected a second time. But these rare cases can not possibly justify the volumes of patients treated by the "Lyme literate" doctors.